A Trip to Holland: My Take on this Special Needs Poem

by jennylynndotcom

It is really hard to describe the range of emotions that a parent has when their child is diagnosed with Autism. For us, we had known that something was ‘off’ with S for some time- so the diagnosis was a bit of relief mixed with a ton hopelessness. Getting a formal diagnosis left me feeling so desperate and so out of control that I still can’t even accurately put it into words.

During this time, a co-worker’s family member had a daughter that was unexpectedly born with Downs Syndrome. This came as a complete shock to the family and it took them a few weeks to settle into their new role as parents of a special needs child. Once they began to come to terms with their daughter’s diagnosis, they sent the following poem out to family to help describe where they were emotionally. My co-worker quickly relayed the poem to me, in hopes that it would offer some support.

The poem is called “A Trip to Holland” by Emily Perl Kingsley and a version of the poem may be found here. I have copied it below for those who can’t access the link:

I am often asked to describe the experience of raising a child with a disability — to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans… the Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives.

You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place.

So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, ” Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Now, initially, this poem made a great deal of sense to me and really helped me through that first week of coming to terms with S’s diagnosis. After all, S is still the same little boy that I have adored since I first held him in my arms. He hasn’t changed, we just now know why he is the way he is. I embraced the idea that S’s diagnosis was just a little detour in life, an unexpected journey into new territory… I bought this poem… hook. line. sinker. After all, it is a very logical poem that really makes coming to terms with this diagnosis seem very straight forward and simple. What was not to like?

But, what this poem doesn’t touch on, is the reality of this detour. This is not as simple as leaving for Italy and landing in Holland and not even realizing you were headed in the wrong direction in the first place. When your child is going through the process of an autism diagnosis, you know that it is coming.

You know your plane is heading off course.

But, you tell yourself that you must have remembered the route wrong, or that each pilot has his own flight path, but that your final destination will be the same. Once you realize that no, your pilot is most certainly taking you somewhere else, you will desperately do everything in your power to stop him- but, there is nothing you can do- because you are trapped in the plane and there is no. way. out. In fact, you may have to fight a million battles just to get him to land.

Then, once you land, not only are you forced abruptly off the plane- but you are left alone to figure it all out on your own. Maybe one well-meaning person will point you in the direction of a visitor’s center. But, I can assure you that all of the information you will need is in another language and will cost you twice as much as you have brought for your trip. Sure, you will learn the language and the land, but how will you survive in the meantime? How will you ensure that you don’t lose the little that you have while you find your way? Let’s not forget to mention that all of the ‘best’ information changes daily and most of it conflicts with each other. How do you know what to believe?

Once you have decided to make the best of your trip to Holland, you will find that in order to actually see any of the sights, you will need to take a seemingly impossible to navigate travel system. 75% of the time, that system will not take you to the sight you want to see. You will constantly have to transfer cars in an attempt to get where you are going… when one fails, you move on to the next. Except, each transfer costs you thousands of dollars and days of your time and before you can transfer, there is a ton of paperwork to fill out and applications that need to be approved. And, there is no guarantee any of this will get you closer to where you want to go. Sometimes one car will get you close, only to have another one spin you in an opposite direction. All the while, well meaning friends and family try to assure you that you are, indeed, in Italy.

Overall, “A Trip to Holland” is a good way of explaining the basic emotional process that you go through to friends and family. The ultimate message that I received from this poem is that you need to accept that things are going to be the way they are and that you might as well enjoy them. After all, the only other option is to be miserable… and that is no way to live life.

I have accepted that my son has autism and I am doing my best to enjoy every day that I have with him; after all, there are many mommies out there who won’t get to tuck their children in tonight. I am so very grateful for all that our family has in life.

However, it doesn’t mean that S’s autism has just caused a simple little detour in our lives. It is not like taking a wrong turn and being delighted to find a new awesome coffee shop around the corner. It is like everything you need or want to do in Holland is ten times more difficult and costly than in Italy. No matter what you do in Holland, you feel completely alone and like you stand out like a sore thumb… and you just know you would have blended right in in Italy. Not to mention, this is NOT a vacation. You do not get to leave and go back home one day… the life you knew before the diagnosis and the one you had always envisioned for your family in the future is gone. Your child will deal with this detour forever.

When you are raising an autistic child, your Holland is filled with a lot of additional, and very difficult, obstacles… and everyone around is sipping coffee in Venice.

16 Comments to “A Trip to Holland: My Take on this Special Needs Poem”

Hi J! I’m also the mother of a July 2010 LO. I’m so glad you started a blog to share your journey! Here is a little story I wanted to share with you: My mother is a Special Education teacher. She has had the privilege of working one-on-one with a boy who has Down Syndrome for the past 8 years. He graduated this year, and in honor of my mom, he gave her the poem ‘A Trip to Holland’ along with a necklace with a windmill charm on it. Although the journey can seem long and bumpy, know that you are not alone! Our children are our children, and no matter their differences, all they truly need is our love and support.

Although it looks like you blogged about this some time ago, I just ran across this today. I am a practicing speech language pathologist (SLP) who also teaches at the University level. I have used this poem in the past to try to describe to my students what parents go through when confronted with a diagnosis. However, I really like your take on it. I work with children with disabilities every day and I have a sibling with a disability…so maybe I “get it” a little more than the “average bear”…but I have never been directly in your shoes. I think you have done a very nice job extending the analogy so that others may understand the frustration and sadness you experience every day. Thank you. I will be sharing your take on this poem with my students.

I am one of Dr. Becker’s students, and I find your blog a unique and very personal way to describe your reality. I am going to send it to a friend whose son was recently diagnosed with Autism. By posting this, you have made a difference in lives of people you will never meet. God bless you

I am so glad to hear that you found this post helpful! It is interesting to re-read it now, over a year later, and to remember those feelings and to reflect on how far we have come in our emotional process. Perhaps I will write a follow up post!

I too am one of Dr Becker’s students, Your take on the situation is very inspiring – I work as an ABA therapist for children diagnosed with Autism spectrum disorder – often times we serve as a support system for parents and families.

I service a child that was recently diagnosed with ASD; the parents are at a complete loss and sad.. I believe this article will be of great interest and inspiration.

Thinking I’ll have your article delivered with a cup of coffee and fresh cake.

Hi Jenny, we have a 32 yrold with neurologic impairment. What i wish that some one had told me, was to embrace the wonderful attributes that your son has, take one day at a time. We allowed our so. To move into his own apt, he lives alone and is under the umbrella of Vista vocational program for i dependence in madison Ct. Once we let him go, the maturity we have seen is incredible. It takes a lot of work, but the opportunities are endless, it is our attitude and expectations that need alterting.
Lor

Hi Jenny,
I certainly can identify with your “detours” in Holland but think about it…If your child was “typical”, then you would not have the child you have, know and love. I’m left a bit unsettled by your blog. Maybe it will come to you some day. In the meantime, hang in. Their is always someone worse off.
Kathy
(Parent of a severely handicapped child who is a love and 22)

My son was diagnosed at age 3 with autism and at age 8 with Tourettes Syndrome. He is now 17 and is graduating highschool this year with a NYS Regents Diploma and is a member of the honor society. He is vey involved in two local support groups for teens/young adults with autism. He is completing his 6th year on his school’s wrestling team (winning many of his matches and well liked by all his team), is on the prom committee, and will be mentoring another young man like himself for the first time the final 4 months of his high school years! These are all FIRSTS for his high school as well! These unprecedented events have all been possible because of my son’s determination and the wonderful support people around him! I have always “uped the ante” and put the supports in place to help him be as successful as him can be. He has become an amazing and responsible young man and the possibilities are endless for him. It really is our attitudes and expectations that need altering!

Each child/parent/diagnosis is different. Not once did i feel that her take on the poem meant she didnt embrace her child or love him less the poem is perfect and the take on the poem is perfect for different reasons I have been asking for help for 7 years for my amazing daughter I have spent thousands and thousands of dollars My attitude has always been to help my daughter to realize her potential but every emotion and thought and concern and everything was described in both the poem and the take on it i plan on sharing both with many many people

Yes, a lot of what you’ve said I find true with our experiences with N., our son with autism. He is 23 now…….and it’s really tough sometimes. I find myself mourning what might have been…….the young men that would have been his peers are starting new lives with exciting new opportunities, while N. is left behind.

Hello, I attended a funeral of one of my handicapble daughters friends to day and I was introdused to your poem. I thought how wonderful. It realy does explain to outsiders how our lives are. M y daughter is 43 and mentally changled, I also have a 6 yearold I care for who has asd.but my life is full and I would not have it any other way. Susan

(Mother of a Spina Bifida child & Gramma of a SPD child) The anger is natural and should not be denied. People that tell you you are so lucky, blah blah blah, yes, you are, and yes, we love our special children; but we also have to acknowledge our anger over not getting to go to Italy. There is nothing wrong with that. We have to look at both sides of the coin here. That is healthy and well adjusted. That, people, is the life of a special needs parent. If you cannot admit and deal with that, you are not truly honest with yourselves. We were financially ruined and will never recover. People do not ever consider that side of things. I would never trade my child for anything; but the healthcare system? Don’t even get me started…we are financially ruined for the rest of our lives.

liked your piece. I always hated that F’ing poem. I used to say, it’s like going to Italy and your plane crashes in the Atlantic. Your floating in a lifeboat getting bashed about by rough seas and after a long and torturous journey you wash ashore in Holland. And at that point, you know, Holland ain’t that bad!